Stiff Person Syndrome Sufferer Reacts to Celine Dion's SPS Diagnosis
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- Опубліковано 15 вер 2024
- I suffer from Stiff Person Syndrome and found out about Celine Dion's diagnosis today, which brought up mixed emotions that I wasn't expecting.
I haven't been feeling well for a while, but this gave me the motivation to post again.
Celine Dion has been open book all her life. Her struggle during pregnancy help a lot of women who were struggling...and now with sps.
It's not selfish at all for you to feel the way you do. You feel seen and heard as a human being and that's amazing. I am sorry you and her both are suffering through this horrible illness. All my love your way ❤️
Perfect post and I totally agree.
Dear Lady with Stiff Persons Syndrome
I hope, now the syndrome is more wellknown among the public, your suffering is recognized more for what it is. I wish you alle the best❤in your life and thank you for educating us about the disorder. I have fibromyalgia and this was for a long time nog known by the public and peoplewho suffered from it also felt very alone. Lots of love ❤ from Anna Maria from the Netherlands.
❣️♥️
❤ I can only imagine how lonely it would be to have this rare disorder and the relief you felt to finally have someone to relate to. My disability’s are far more common and I remember that it brought me to tears to meet another person that understood my daily challenges aside from medical professionals. I hope the recognition and awareness brings new research/treatments ❤️ My heart goes out to you, Celine and others who are fighting this battle. Stay strong, you’re a warrior *gentle hugs*
What a classy young woman! I wish you all the best and pray medical science will find a cure soon.
Thanks for sharing your story. Stiff-person-syndrome is rare but I do have patients with good results with immunotherapy (rituximab, azathioprine, IVIG, etc) and symptomatic treatments such as diazepam.
Hello. Thanks for this information. Have you had any success treating (symptoms) this with anticonvulsants (gabapentin, pregabalin) or marijuana?
@@bengt_axle I have not used anticonvulsants. Marijuana has been used for spasticity in multiple sclerosis, so it could potentially be helpful. More info here: ua-cam.com/video/qHEEa-C-GH4/v-deo.html
What about deep brain stimulation to control spasms, I see it being used for other conditions that cause horrible spasms and seizing in the body? I am being evaluated for this horrible disease and want to run all treatments past my doctor . Would the nasal Diazepam provide faster relief than pills?
Thank God for technology to share concerns to our health issues
I have a friend who's dealing with Lyme Disease and shares similar symptoms with spasms, pain and suffering...its sad seeing such a bright young woman suffering so much.
Thanks for sharing your story. Your courage and kindness to be so bold and share it will help others suffering from the same disorder.
Hope you overcome it, and i hope Celine gets better,, strength to all who is suffering from this, I'm glad u feel less lonely
I hope you get a group page started about this disorder. Celine may be interested in joining and having others who suffer with it have a community. I know it's one in a million, but there's millions of people all around the globe. Best wishes for your future. ❤️❤️❤️
You are not selfish you are so brave to speak and explain this disorder ,sending you a big hug x.
Thank you for sharing your story. Thank you to your boyfriend for supporting you and being there for you.
i completely understand how you feel - it must be an immense relief get visibility on this syndrome that is so rare. Cant imagine what a struggle it was to get diagnosed and just by her having it, suddenly so many people know about it now. I'd never heard of it before and i was shocked that it wasn't on the nhs website. Wish you all the best for the future!
Ur comment is sooo on point!!!
Sweetie, I’m so happy you have found a platform to express yourself! Illness is so difficult to talk about. If your comfortable, we are listening! Sending you as much positive energy I can muster up for you. Your a brave young lady!😊😊🇨🇦
Your feelings are perfectly normal and perfectly OK.
I am sorry you’ve suffered. Sending love your way 🙏
I'm sorry for your struggles. I want to say that maybe Celines diagnosis might bring more research to this condition, and hopefully a cure. Much love and respect to you ❤️
I'm glad you no longer feel so alone. Keep up the good work and keep spreading the word! The world needs more awareness on this devastating disease.
I'm so sorry for what you are going through!! God bless you.
I’m glad you feel less alone and can now more easily explain by saying “it’s same thing Celine has”. Glad you posted this. Sorry you struggle with this and I pray there will be future treatments for this.
You are a sweetheart; thank you for sharing your experience publicly.
Thank you for sharing your story, I’m sure it was not easy for you to go on camera, you are very brave!
God bless you!!🙏
I hope you’re well and I wish for you the healthier life you can possibly live with this condition. I also hope the awareness Celine brings to the matter translates into public politics, better access to diagnose and treatments and more scientific research, for you and all people who suffers from this syndrome!
I know exactly how you feel as I have been bed ridden for the past 3 years, not with the same disorder but multiple illnesses that have been resilient to medications etc. I am being treated with chemo meds - injections pills you name it, with no relief. I have lost family and friends, I can't go out and drive any more and I can't work. Financially and Emotionally, topped with physical constraints, this is a very lonely existence. All that to say good for you speaking out and sharing your experience and hopefully you get the help and support you need.
I'm so sorry to hear about your struggles.
My heart goes out to you, from Australia. This is a very distressing syndrome and must be incredibly difficult to live with. Hopefully, Celine is having top therapies which she is experimenting with and her results can be passed to you and others who are unable to access these due to financial constraints. I am hopeful for you that better care is not far away. You are strong and determined and that is a great thing for fighting anything like this.
Thank you for making us more aware of SPS by sharing your experience and for your courage and for wanting to make a difference for all who suffer from SPS !❤️✨️🕊
10 years ago I went through a few months of that and it was so bad the pain was out this world, I had it all over, my toes were curling up, thank god it settled down, but I didn't know why I was getting it and it was put down to anxiety. Really feel for you and can't imagine how you cope with that every day.
Thank you for your message. You are such a caring person. Feeling alone is so very hard.
I'm so sorry that you have to live with this awful illness. I pray that you have many more good days than bad, and that your doctors take the best care of you so that you can have those better days 🙏🙏
Your feelings are so justified. I can’t even imagine trying to explain to people what you are going through. Your willingness to share is a wonderful thing. God Bless You
-central Wisconsin: Thank you for posting this. Lifting you up in prayer, also wishing you a Merry Christmas. I am also so sorry you are dealing with this horrific condition.
p.s. I’m glad your partner Dion is able to be a good caregiver to you. Thank you Dion for all the support you give her.
Thank you for your bravery in sharing. God bless you and may there be a cure found someday soon. Until then, may you have relief and support from doctors, family and community.
I’m so sorry for all you have had to go through. Hopefully you feel a little less lonely now.
Thank you for sharing your story!! Wishing you peace in your journey❤
Father, you are the author of our faith. We thank you for your gracious love from which nothing can separate us. Whether it is life or death, victories or losses We know you are present in our lives each day. Your love surpasses all things. You encourage us to be anxious about nothing. Through prayers, thanksgiving, and supplications we should let our petitions known unto you. We know that as long as we are in this world we will endure pain, and suffering and even get persecuted for the things we believe. We thank you because you protect the ones you love, and your word is always genuine and unfailing. You said you would be with us in times of pain and suffering. When we pass through the fire the flames will not consume us, nor the waters overwhelm us as we walk through the rivers of life. My Lord and my Savior, your child's body, is overcome with pain, and your child is in distress. We call upon you to establish your word. Send your healing word to relieve your child from her pain. Remove the pain and restore your child back to her joy, vitality, peace, and happiness so that your child can testify to your wondrous deeds and mercy. Your child is very valuable. Your will be done. I say this in the name of our Lord Jesus Christ. Jesus is Lord. Amen.
I think you are so brave and so strong to put your voice out there about your condition I never heard of it in my life and I am 72 when I heard Céline Dion‘s diagnosis I was confused and didn’t know if it was real until everybody started talking about it and it is shocking what this disease does I would definitely like to hear how long you had symptoms and what they were thank you so much For putting the word out there I hope you continue to do so and so you can monetize this channel thank you again
Thank you for sharing your thoughts and disorder ❤️ Don't feel guilty because Celine Dion has it because as you say at least it now the SPS is more recognised . Take care and look after yourself ❤️❤️❤️❤️❤️
😢 I am sorry you are dealing with this. Wow seems like you have been through a lot. I am sending you a bunch of hugs 🤗 and kisses 😘. I have Neuromuscular Scoliosis it took 17 years to finally get a direct diagnosis. I am sure you know how that feels. I am happy I found you and I am going to keep you in all my prayers and I love you 😘 Give yourself a huge pat on the back for your courage you’re amazing and wow your voice came back like magic. Kudos to you both ! Never give up and never give in. 🤗🥰🎄🎁
Thank you for this video. I'm sure there are others that are not quite as lonely because of you & Celine. Best Wishes.
Your channel just came up spontaneously, and I'm so glad it did. I'm so sorry that you have this awful disorder, and for your poor treatment by the medical profession. I'm also happy that it now has gained more recognition, and I pray you get a cure soon! 🙏
You should definitely petition the NHS. Start a change petition and I'll sign it!
Your video showed up in my feed, and I believe more and more people will be exposed to your channel. You are doing a great job of raising awareness for this disorder! Best wishes to you🌻
I think you are a champ and very kind by making this video explaining this
unfortunate disorder.
The world needs to be made aware of what happens to one with this disorder. Try not to feel lonely. You are in my prayers as Well as your boyfriend.
Thank you for sharing about yourself and helping us learn more about stiff person syndrome. I look forward to more content from you if/when you are able.
Thank you for making this video. I am so inspired by it. We'll spread awareness! Greetings from Peru
Thank you for sharing. I bet it has been incredibly lonely. Nobody should ever be dismissed for being sick. I sure hope things get better for you. I do have a lot of questions. One is , are you constantly stiff or do you have flare ups?
❤ Kris
My heart goes out to you. Thank you for this video
Take care of yourself! You deserve the Best!...Try to reach out to Céline's Team, I am sure you will have some feedbacks!
Well, I personally want to thank you for stepping out even though it took waiting for a celebrity to say hey this is what I have just know that you are a blessing and what you’re going through is absolutely horrible and unfortunately you have it but you’re handling it with grace the good thing about Celine Dion having this same disease as you it’s also unfortunate but it’s going to put a blame under peoples asses and nervous to start looking into it more now I am with gods good graces maybe they can come close to finding a cure for coming up with more medication’s to help you guys. I myself am waiting on test results to tell me what rare genetic disorder I have I was told it’s called HPP the one they think I have and the short version of that is my body doesn’t take any calcium the way it should as they put it. It’s a very rare, rare disease just not as rare as yours and coming across your video today gives me hope I know it might sound weird but from everything I read on your disease if you’re sitting here today talking to us about it I have hope and I say god bless you.❤❤
It must be such a isolating illness. I hope good things come from Celine’s diagnoses and announcements on social media. It is a terrible thing to be diminished due to lack of understanding or knowledge of an illness. Wishing you both strength and hope for the future 💕
Your honesty in sharing your story is wonderful so thank you for doing this video. The rare disorders are far too easy to push to the background. Perhaps now that a famous entertainer has this syndrome there will be much more awareness and education that leads to faster diagnosis. Your NHS should absolutely be listing this on their website! Keep pushing for change. It doesn't come quickly sometimes but with enough media attention, like your UA-cam channel, it will happen. I wish you all the best from Canada!
You are not selfish! I didn’t hear Celine talk about helping others with the condition. You are amazing! Prayers for you! Thank you to your boyfriend for helping you!
I really understand how you feel i wish you happy and live a precious life happily. May god bless you all the best 🙏 ❤️
Thanks for sharing your story. Hopefully, more awareness will be brought to this cruel disorder! 🥰🙏🏻🙏🏻🙏🏻❤️❤️❤️
I have been a registered nurse in america for 30 years and I have never heard of it. I did watch celine dions video and that is the first time I have ever heard of it. I hope you both get well soon.
May God continue to bless and keep you. I pray for your healing💜💜💜
Hopefully, Celine's fame will bring so much attention to SPS that they will find better treatments or even a cure that would benefit everyone.
I will definitely share and we would love share awareness about this syndrome. Praying for you and you will get monetized sweetheart ❤🙏🏻
Thank you for sharing your story! Even though it is a rare disease, it will now have more research funding. I do not have a rare disease, but I do have a common chronic disease. I hope there will be increased attention given to Stiff Person disease, so that progress can be made towards a cure. ❤🙏🏼
You are so very brave to come forward. I pray that you are healed and gain the strength and resilience to manage whatever life brings forth. Sending you so much love and blessings... ❤️ 💙 💜
It is alright to feel the way you feel.... you are not being selfish at all. I can not imagine being diagnosed with this disorder and suffering through it. It sounds incredibly painful and takes away your life and you have to change how you live because of this disorder; because it apparently rules your life. I feel bad for you, Celine Dion, and any other person suffering from this.
If anyone passes judgement on you, just ignore them and move on from them. They are not in your body and are not feeling what you are feeling.
Peace, love, and light to you.
Absolutely agree! Great post.
Maybe since Celine Dion's diagnosis became public it helps others feel less lonely who have the same syndrome and more research will find new treatments for this condition. Wishing you all the best and hoping that maybe you'll become inspired to change your channel name to "Of Great Value"! You are Never less valuable! ❤
Yes NHS post on the website and it should also be counting cases all over the world. Dion you are great. Thank you for taking care of such a special lady. God bless. Keep up the fight.
Because of Celine, I learnt about SPS and now when I look back, I realize that my mother may had SPS, but because there is no knowledge or diagnosis among doctors in India, it never got recognized.
Thank you for your post. I hope this brought you some comfort and relief. I don't really understand why you're confused about Celine having this same condition. This just shows that ANYONE could get this. If anything Celine bringing attention to this could be a huge positive. Remember, however that we are all different, and just because she's not showing us herself in her worst times, her pain is just as great. My prayers are with you, that you find relief as soon as possible. God Bless.
My mother in law has Stiff Person Syndrome along with Myasthenia Gravis. She is having a very hard time finding someone that knows how to treat both. Very hard to watch someone go through it.
Maybe your video will help encourage more research. I wish you the best!!❤
My heart goes out to you
Wonderful! God bless you for your determination and willingness to share with us. Your energy and efforts in dealing with this syndrome can serve to be an amazing example in courage for others. Thank you for your selflessness and may God be with you and yours.
Your channel popped up today as a recommendation. I am so sorry you have to suffer with this rare condition. Praying that with the name recognition of Celine Dion it will help bring about more studies and science to figure out how to help you. You are brave and seem very kind, a person I would like to know. I liked and subscribed so I do hope you will update us when you can. Take care friend.
OH…MISS, THANK YOU for sharing this information…It’s perfectly for YOU to FEEL like you do…having a well-known person diagnosed w/ this same health situation; I agree with you: this disorder Will get more attention now. YOUR vid HAS opened a door, & is shining a light on this disease…! MISS, PLEASE “KEEP UP THE GOOD FIGHT!” (I admire YOUR strength & determination). GOD BLESS… 🙏🙏❤️❤️👣👠
I’m happy that you feel less lonely ❤. I hope it gets more awareness and all you guys get some treatment ❤
You are beautiful, well spoken and brave.
I believe your voice will somehow join with Celine's to make a huge difference for research and treatment options.
God bless you and Dion.
I've been reading about SPS since Celine's post...I've read because it's rare it doesn't get much research... hopefully because of Celine there will be substantial donations to help find a cure...I found a foundation & I plan on donating on Celines behalf & others who suffer with this disease...it the first time I've heard of it
Lorraine here, Watching from Newfoundland, Canada, Thank you for sharing your story, Wishing you all the best..Hugs Lorraine
Bless you dear Lady. Let's hope Celine can find a cure for the world
Thank you for sharing, until Celine Dion shared her struggle with SPS, I had never heard of it. Hopefully she will become the spokesperson for the disorder. May you find some relief and happiness along your journey.
Thank You for sharing your struggle with this disease. Maybe they can now research it more!! Sorry you had to wait so long…and had to self
diagnose yourself. But you are right that now a person that’s in the public eye has this disease, it can be researched a lot faster and more doctors will have hands on, and investigate deeper, research more!! I’m really sorry, sad and happy!! Sorry you had to go through this alone, with no one really knowing what was going on with you or how to treat it. Sad for the same reasons and Happy because you had someone that stood by you through the whole thing!! (I know you were lonely and felt alone) because their was no one else at the time that was being diagnosed with this condition. I’m also Happy that you are here to tell your journey about this condition. You never know…Maybe Ms Celine and her medical team will
be reaching out to you!! I know how you feel…I have Sarcardosis and they didn’t know much about that until some big name persons passed away from it!!! Stay well, keep fighting, stay strong and continue to update us on what’s going on with you!!❤ 😢You Never no their may be a cure in the works…THANK YOU FOR SHARING WITH US ABOUT WHAT STIFF PERSON SYNDROME (SPS) IS AND HOW IT AFFECTS THE BODY!!❤🙏🏾
What a nasty, and horrible condition and I’m so sorry that you have this. Hopefully, Celine will bring attention to this disorder and more funding will go into research for improving the lives of those who were unlucky enough to get this. Do you have any insight as to why you? Were you stressed or sick before hand? I wish you a Merry Christmas and look forward to more posts from you. ❤️🇨🇦
I'm so sorry in how you're doing! Suffering is awful at any time! Please take good care.
Thx for sharing and being so courageous! Anyone suffering a disease is strong with God in there life helps a lot!! 😊
Stay strong hun ❤
so sorry to hear you have it, but you are right in feeling that at least now it is represented in the media .. maybe there are more who will hear of it and realize it's what they have ! You are doing a wonderful thing here - God bless !!
❤️ Thank you for sharing your experience.
So sad to hear how lonely you where!!! 😢
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You are young and I truly hope more attention will be brought to this disease. It's unfortunate a celebrity is likely the cause for this but it is still a good thing. I hope one day you can connect somehow with Celine Dion. She is a kind woman and is determined yo get better. Any medical improvements done because of her will help you also. I lost my only sister ( my best friend and the love if my life to a rare brain disorder. One in a hundred women and sometimes men get it. Please keep as strong as you can mentally and physically. I believe eating a healthy whole food plantbased diet can help somewhat. Take care.❤
Thinking of you with best hope. You make me feel a kind of relief that I “only” have aggressive osteoarthritis. How can we help get this genuine condition recognised so you are covered by the NHS?
Good luck to you girl, I sometimes think that I should have all my ills tattooed on my head, so people can have a good read whilst I talk. ❤
I have the same feeling about long COVID popping up, as they’re pretty much the same invisible problems that our community with ME/CFS have. We don’t feel so alone, and are happy it is finally being recognized. Long COVID patients are getting info from our community and saving a lot of time….once they calm down their nervous system, they’ll then absorb the info.
Chronic health issues are lonely, exhausting and so much more.
I’m sorry you are suffering with this illness.
My friend Suzanne suffered from SPS through out her entire body, the only person to be be so afflicted in the US at the time. Her episodes started after being treated for breast cancer. She went through hell, sometimes her entire body could spasm for hours at a time. I hope medical science will now concentrate on finding a cure or at least a method to reduce symptoms soon.
You are sweet and courageous, and I think because the 2ounds are not showing outside ,people, including doctors disregard our torment! Get better
You are amazing for sharing your story with us..I pray you will recover and with Celine being diagnosed it may help this disease become more known and research for a cure.. I think you are so sweet and have a kind spirit and your amazing boyfriend for being by your side and helping you..God bless him also..I will subscribe so I can follow your journey
God bless you and I hope that there is an effective treatment for you soon! You are an inspiration!
You are brave and I hope you have someone to help you and be with you. Try to have a good holiday season. You have said more than you know. May you be blessed in all that you do.
Thank you for sharing. You provided great insight into the condition!
Blessings on you.
Absolutely, when some ,"famous", person gets a unusual diagnosis it is subject to research and discussion. Awareness, us a good thing.
Thank you for sharing, and take care of yourself...
May God bless you and help you that one day they will find a Cure God is Good ,,,,
Those of us who have common disabilities suffer enough but you also feel isolated; now you are less unknown and have someone famous to point to.I hope the NHS reconsiders their position about their website.
Hello,nice to meet you,my friend
Thank you for sharing
I am not aware of this Syndrome so thanks for enlightening us
Sorry for what you are going through this
Maybe,the fact that she is a Celebrity will bring more awareness to this disease and further research will be done
Warm Hugs
From
Amman Jordan Middle East
One question
What medication helps with pain and other symptoms
Sending you healing ❤️🙏